A fear that is the stuff of nightmares–the fear of being paralyzed in a pain-ridden body–became realized a few weeks ago in late March.

Evening One

Without a doubt, one of the most insidious aspects of living with multiple sclerosis (MS) is its unpredictability.

It fundamentally undermines any conception of time measured against a normalized life span, and explodes the assumptions we attach to youth and the productive citizen in a capitalist world. In fact, with MS, flare-ups (or relapses) unfold so unpredictably that I often fall asleep anxious, uncertain as to whether I’ll wake up the next morning capable of feeling or moving my hands or feet.

The spontaneity of auto-immunity is so stark that the everyday assumptions many of build our lives around–including something as innocuous as being able to walk to your car or bus stop–is called into question. More so than most, it is an anxiety-ridden life that unfolds in a very different temporality, micro-compressed into daily (sometimes hourly) survival.

A fear that is the stuff of nightmares–the fear of being paralyzed in a pain-ridden body–became realized a few weeks ago in late March. It actually started with me being startled awake by head pain and a skin-crawling, difficult-to-describe discomfort that came with the feeling of having a golfball lodged in my brain. I was weak on the left side of my body, and couldn’t hear through my left ear. I knew immediately that something was wrong. Horribly, frighteningly, unquestionably wrong.

And just like that, over the course of a single night’s sleep, I was pounded by the reality that yet another flare-up had struck. As annoying as that friend who complains about her job, yet again, I was getting so sick of it…and yet I couldn’t draw my attention to anything else. The uncertainty made me cower into silence. How could anyone help, even if they claimed a desire to?

Not only was I physically distant from others, I also felt alienated from my own living flesh. Pain-killers enabled me to lift myself out of bed, haunted as I was by the all-too-possible possibilities: more inflammation, more irreversible nerve damage, more disability.

So when I walked into the ER that night, I patiently endured the hours of lying on a cot, enclosed–yet again–by the round-the-clock din of medical madness.

The neurologist who came to see me was a young white dude who looked like he had just recently graduated from medical school, hardly older than my twenty-six years.

Following an awkwardly slow entrance, the neurologist machine-gunned me with questions that went from the slightly tedious (such as when I was first diagnosed and the nature of my initial symptoms all those years ago) to the downright aggravating (including such irrelevant questions like ‘what/where do you study?’ as well as condescending ones like ‘how do you know this is a flare-up?’).

Given my experience, his neurological examination was more exhaustive than it needed to be, more so suggestive of a performative display of doctorly showmanship than a pragmatic, diagnostic exercise. Of course, my exhaustion and aggravation with being poked and prodded like a lab rat for an hour had only been tempered by the possibility of receiving useful treatment—in this case, a round of anti-inflammatory steroids (Solu-Medrol) that has been the standard treatment for acute MS flare-ups for decades.

So, of course, when he came back stating that my symptoms were insufficient to ‘recommend’ such a treatment, my heart immediately sank. I had gotten treatment under lesser circumstances, but there I was, immobile. I felt like I was losing a grip on my body.

And I knew that the stakes were too damn high to not strongly voice my disagreement. I tried to counter his stoic machine-like answers with the authority of self-knowledge, the sort of corporeal awareness only I had access to, but rather than genuinely validate my experiences his answers only implied my sheer stupidity, scientific ignorance and lack of objectivity (“I’m sure that what you’re experiencing feels real to you…”).

Once I cornered him into an awkward, submissive silence that permeated an air of guilt (why should he feel guilty?), I realized I was only wasting time.

Fueled by rage and sadness, I muttered a quick “I need to get the fuck out of here.” I quickly gathered my clothes and, for the first time, left refusing to sign any paperwork.

[S]he became irate and began a long, abusive tirade that consisted of victim-blaming and reprimanding me for things that had nothing to do with the provision of care.

Evening Two

Maybe in an alternate universe things could have ended there, with me finding my way home in the dark, waiting for a meeting with my actual neurologist, getting a round of steroids, and seeing my symptoms wane. But hell never ends on an predictable note.

Frustrated that my worst relapse in years was unfurling without so much as a batted eye, I clung to the hope that I could manage my body’s auto-immune response through sheer will power and good nutrition, stuffing my kitchen with fish, avocados, nuts, vitamins and greens. (In actuality, much of the claims behind these foods have not been rigorously examined through empirical methods, but like most people in my position with few alternatives, I figured I had nothing to lose by at least trying).

It was an illusion of control uncomfortably situated alongside another element: a deeply-rooted premonition that what had happened overnight, unpredictably, wasn’t over. I started to fear my body, which felt like a ticking time bomb of auto-immunity. Although I tried to distract myself through hours of Netflix binging, I could feel the inflammation spreading–the incontrovertible sign that my T-cells had betrayed me again in a senseless civil war.

In a flash of minutes I went from watching TV in bed to being overcome with a spontaneous swelling of heat to the head. Just when I thought my heart couldn’t sink any further, it plummeted. I felt shards of glass cut through my mouth before gasping within a deep, pulsating warmth. I couldn’t swallow. I couldn’t breathe. I had been sucked into an inferno.

I did what I think most people would have done under my circumstances by calling 9-1-1. But in trying to answer the operator, I realized that I had also lost my voice. So I struggled to articulate my symptoms and location as the most apocalyptic of thoughts circulated in my mind.

I started to wonder if I had been deceived by the MS literature. Was Idying? Did I catch a life-threatening infection? Did I actually have something more severe than MS? By this time I was squatting outside my building, crouching on a street corner overlooking the I-5, facing the toxic silence of a suburban night.

When the paramedics came, I tried to answer their questions. I struggled to voice “MS,” but their initial interpretation of “meth” made it clear what pre-existing conclusions they had come to.

As I was hoisted onto a stretcher, it was a police officer who demanded that I submit an ID, even though I was unable to feel my fingertips as I felt for my wallet. That I was being criminalized by white professionals as I gasped for air and felt my blood pressure hit the roof says a lot more than any critical analysis ever could.

I ended up in the same hospital as before, although incredibly worse because I had been refused treatment. This time, I didn’t have it in me to put up a fight. My eyes were shut firmly, partly because of my sensitivity to light then, partly because I didn’t want to believe this was happening. I was thus squinting when the second neurologist pulled back the curtains; it looked like a blonde demon emerging from its lair.

She wasted no time in complaining that she had to drive half an hour to see me at 1:30 in the morning—an expressed grievance that struck me as unprofessional and insensitive under the circumstances. Her peremptory bedside manner also made it clear that I was the last person who’d receive empathy that night.

She insisted that I describe my symptoms at length, even after I had expressed that I was under crippling pain and having difficulty speaking. After the neurologic exam, she reiterated the fact that she came out here in the middle of the night to see me and, with an air of exasperation, reasserted her right to get to know her patient.

With a heavy throbbing pain still traveling down the length of my spine, she asked me a difficult-to-socially-navigate question of what I was studying. Making a half-hearted effort to be discreet, but too pained to give it much thought, I bluntly told her that I was under a lot of pain and not in the mood for “light talk.” At this point, she became irate and began a long, abusive tirade that consisted of victim-blaming and reprimanding me for things that had nothing to do with the provision of care.

In a patronizing tone, she told me that she had read the online correspondences between me and my neurologist in the hospital’s system, and despite a misreading of my doctor’s message, remarkably claimed that I didn’t understand my own condition.The condescension continued as she asked me (under conditions in which I was unable to speak freely) to describe MS and how it unfolds, improving upon the last doctor’s superiority complex in treating me as someone incapable of understanding complex scientific information, let alone as someone whose lived bodily knowledge should have been respected.

Over the course of the night she echoed the previous doctor’s refusal to provide treatment, and began to hurl a series of judgments that had nothing to do with “care”: the implication was that it was my fault for “demanding” Solu-Medrol, for breaching “trust” with the hospital, for not submitting to their unquestionable authority.

At this point, between feeling vulnerable, abused, and incapable of self-defense, I didn’t even bother to challenge her in what was an obviously unfair battle: I repeatedly muttered “OK” with every passing judgment hoping to get her off my case. Not only was no treatment to be had again, I was now having my wounds salted while lying on my back.

Escape from the Inferno?

Late into the evening, I was thrown out of the hospital, forced to walk home unsteadily, under pain, spasticity, dizziness and blurry vision. Somehow I made it home, traumatized and wishing the American medical system would succumb to slow, torturous, and ever-painful flames. Things got worse before they got better, but in brief, my MS specialist eventually prescribed me the steroid infusions I knew I desperately needed, and weeks later I’m still dealing with a longer-than-necessary recovery.

It’s too early to tell whether the damage is reversible. To be sure, I’ve had a myriad of negative experiences with doctors, hospitals, and the medical industrial complex that preceded this incident. But the callous insensitivity and outright abuse I was subjected to at UCSD’s Thornton Hospital has been particularly memorable, even terroristic and traumatic.

In an age of senseless police shootings, drone attacks, and militarized border deaths, I didn’t need a reminder for how destructive and self-centered humans can be. I had been rendered literally speechless, and still, I am speechless when thinking about how inured we’ve become to the ruthlessness and greedy entitlement of those in power.

Questions that shouldn’t be questions are foregrounded in this experience: What kind of world is this that a single night of sleep for a privileged white doctor is rendered more important than someone’s overall health and livelihood? What kind of world is this that a sick man is criminalized for something he had no control over, and then subjected to judgment and condescension while his pain is trivialized and ignored?

The saddest part of all this, however, is the fact that I had surrendered to their deadly logic and internalized the not-so-subliminal messaging: that is, that my life just isn’t worth saving.